31 December 2013

2013 has been so good to me that I couldn't possibly end the year on a negative blog post.

I've achieved so much stuff! Being published in big-time online publications. Received a writing mentorship and started a book proposal. Took up and actually enjoyed exercise. Worked with two great causes - Donate Life and Love Your Sister. Lectured at a university. A (temporary) new day job. Traveled interstate three times for blog events. Met some wonderful people. Curated the Ichthyosis Awareness Month blog project and publishing stories appearance diversity here. Made the media. Booked another overseas trip. Won three writing and blogging awards. Found love. Life's good.

One of the biggest lessons I've learnt in 2013 is to take a chance on someone. I had high expectations - probably quite hypocritical of me really - and these expectations could have meant I let someone wonderful slip by. But I took that chance and couldn't be happier.

I have really tried to focus on my writing this year, to create a somewhat cohesively themed blog. I've written a lot about visible difference, and I've really enjoyed it. I love exploring different perspectives and learning more about the issue. Sometimes I worry that I am too ranty, always on a soapbox. But then I remember that my blog is only a facet of my life and most of the time I'm not this opinionated. The absolute best thing about blogging this year has been the people I've met - both in person and online. Someone telling me I've helped them face their demons of not being able to cope with their visible difference is an amazing thing. And it's been lovely to be recognised in the blogging community too - thanks Kidspot and Bupa for my awards, and to news editors for taking on my blog posts for wider publication.

I have no resolutions for 2014. I don't know what 2014 will bring - the only certainty is that I fly overseas on 29 March for six weeks. But if the year is anything like 2012 and 2013, it will be a great year because I will create it that way.

Happy new year to you! I hope you have a great night celebrating. And thank you again for reading here, for your friendship and support. It means so much.

30 December 2013

My photo has been misused on Reddit it three times now. Its been dissected, discriminated against and threatened. This post isn't about giving the cruel Redditors attention, me seeking attention or whoring myself to the media as some have suggested. It's not about ignoring it or pretending it isn't happening - because it is. It is about me taking back the power.

The first time I was discussed on Reddit, it made the international news, after I responded gracefully.

The second time was in a subforum titled I am going to hell for this, the the post was called 'A sophisticated lobster'. There were nasty comments saying I should be killed with fire. It was removed after I reported it to the general manager, and he said "sorry that happened to you".

The third time was in this same subforum, titled "guys, you've angered the lobster again'. I reported this to the admins but haven't responded directly. Someone linked to my blog and so traffic is being directed here, educating Redditors about my condition. I'm not responding directly because I am not going to add fuel to the fire.

See, I have ichthyosis, a severe, rare and lifelong skin condition. It's medically challenging but the social challenges like this can be worse. Every day I am judged on the way I look, before opening my mouth. I was alerted to the discussion about my photo on Reddit through my blog comments. These people were sitting behind their screens discussing me - and discussing others' lives in the most hurtful way.

And sure I put myself out there on the internet, my photo is splashed all over. But I do it on my own terms. I started blogging so I could educate people and have a sense of control of how my condition is being portrayed.

I stood up for myself on Reddit because I had the confidence to do so after blogging about my appearance for so many years. I thought I was brave enough to take it on (again), but I'm not. I can't stop this cruelty.

The founders and administrators of Reddit have a duty of care for people's emotional and physical safety. Right now I'm not feeling safe.

I feel pretty confident about my appearance. Words on a screen are not enough to make me hate or feel disgusted about myself. But they scare me. They make me realise that it's going to take a long time for diversity to be accepted.

Above my safety, I worry about the people who cannot defend themselves - those who aren't strong enough to do so, those who might take their lives over comments like the ones I've received. And they do.

Reddit should not perpetuate this. I hope they reconsider their policies and police their forums better so this does not happen.

Enough. Stop this disability hate, this body and appearance shaming and ridicule.

And yes it's better to stop reading the nasty comments, walk away from the internet, but I will not let my picture be used like it has been. Ever.

I've seen the worst in people through this Reddit drama, but my gosh I've seen the best. The lovely people have outweighed the haters. I have that in good perspective, and do feel so loved. A sincere thank you for all of your support.

27 December 2013

This boy, he told me he can't love me any more because his heart is too full with his love for me. My heart melts.

(I have been so reluctant to make a photo of him and I public, especially with this recent (cough) internet fame, but he's given me permission to do so.)I'm not an inconvenience to him - or rather, my skin isn't an inconvenience to him. There's no brushing off my skin from his clothes or wiping the paraffin from his face after I kiss him. I keep saying I will buy him some blotting paper for his face, he said why bother when he will only kiss me again and get oily again. I believed there was a high chance that I'd live my life single, alone forever. Finding love when you look different is hard. I'm not playing the victim, but I believe it's a huge barrier - and you have to prove yourself so much more than those who don't have visible differences. The amount of times I've got my hopes up and have been disappointed are too many to count. I've never looked normal enough for someone. And just when I wasn't looking for or expecting love, I found him. How wonderful it is to love him. He is my gift of love, source of laughter and cure for my skin hunger. His razor is on my bathroom sink and I feel like I'm in a real relationship. Now I'm planning a future with him. Love is him finding skin in his pockets and smiling because the flakes are portable memories of me.Love is a morning kiss when my face is unwashed and hair all fuzzy - when I feel my least beautiful. He says I'm beautiful all the time.Love is switching to sensitive skin products that I can use, in case he hurts my skin when he holds me.Love is involving himself in my community, planning to attend a dermatology appointment with me, and asking questions about my skin out of genuine curiosity and compassion.Love is holding my hand to stop me scratching at night, and appreciating - not complaining - that my stupid unregulated body temperature means I'm a heavy duty heater in bed. Love is wanting to look after me when I'm sore, even when I am well practiced in looking after myself alone after all these years. Love is his big heart, beaming smile and warm arms, waiting for me at the end of the day. To those people with Ichthyosis or other visible differences and disabilities: I can't say you will find love like I have. But there is hope. There are people who won't look past, but embrace your differences. They'll love you for everything - even the skin you exuviate. I look at others with Ichthyosis who have found love with sheer joy, knowing that they're lucky ones too.

The reach of these articles through social media shares and the support generated has been wonderful. People have told me that through me telling my story, they have become more confident in being proud about their own appearances.

These are the things I've learnt since Thursday:

It pays to stand up for yourself online. It helped me stay strong and have a voice, and it made people take notice.

The nasties only know me through a picture and a few hundred words I've written. If they're going to judge me on that alone, then they need to get out more.

Kind people outweigh the hateful people by 1 million. I've received thousands of wonderful messages from all over the world in many languages, and only five pieces of hate mail. (I haven't had a chance to reply to every email and tweet received yet, but I will try to soon. Thank you.)

Tall poppy syndrome exists. It's been best to get someone else to moderate my emails to avoid seeing messages telling me to kill myself for looking so ugly. My boy said he'll hack these comments so I don't have to.

That Daily Mail doesn't take no for an answer. They used my story, photos and video without permission. But, unexpectedly, the support generated from The Daily Mail has been amazing.

Educating people through heartfelt words is better than getting angry. So many more people now know about ichthyosis and think differently about judging people on their appearance alone.

Being 'Internet famous' is weird. I had over 80,000 hits in two days. Can I retreat for a while?

"WTF is that? Looks like something that was partially digested by my dog."

"Lobster."

"She looks like a glazed donut."

"I dated a girl with a mild form of Ichthyosis once.Thankfully she was Filipino so her skin was naturally brown, otherwise she'd be as bright red as her. I thought her skin was cool.. it certainly wasn't unpleasant, but had a nice texture. Plus her boobs felt like underinflated basketballs... Very fun to squeeze :)"

"Seeing people like this smile makes me uncomfortable. It looks like a lie; they are only smiling in an attempt to fool themselves that their lives aren't horrible. You can see it in her eyes. The same rehearsed dead-eye mouth-smile in all her pictures. Gives me the willies." (That photo was actually taken on one of the happiest nights of my life, when I met the Rush cast.)

And there were countless diagnoses (so many people educated by Dr Google) and assumptions of sunburn. They annoyed me a lot.

Then I looked further and there was SO much support. People had linked to my blog and become educated. They'd called out the nasties. There were SO MANY positive comments about my appearance. One person said I look like Geena Davis:

–]juliabl 1 point 31 minutes ago

There, but for the Grace of God, go I. Parents, teach your children not to laugh at people that aren't what society deems as "perfect". That's my sermon for the day, keep your comments to yourself if you don't agree with me. I don't need any help, thanks tho. Except for her condition she has a smile that makes her look like Geena Davis.

permalinksavereportg

"There, but for the Grace of God, go I. Parents, teach your children not to laugh at people that aren't what society deems as "perfect". That's my sermon for the day, keep your comments to yourself if you don't agree with me. I don't need any help, thanks tho. Except for her condition she has a smile that makes her look like Geena Davis."

One guy said he wishes he hadn't missed his chance to ask me out on a date.

And this guy, he was a standout:

"You, madam, are the strongest motherfucker I have ever HEARD of, let alone met. If you are ever in boston, i would be honored to buy you a beer."

I knew the day would come that someone would create a Reddit thread about me, using my photo, having a laugh at my appearance.

For years, that fear was why I didn't share photos of me online. But now, after gaining confidence and support through years of blogging, I couldn't care whether they call me a lobster or silly putty.

The love I have around me and success I have had through telling my own story to break down stigma like these Reddit threads is stronger than any of those words.

Yes I have Ichthyosis. Yes that picture is me. Don't fear it and don't criticise it. I am proud of the way I look, what I have achieved and for telling my story.

FYI: I have two forms of Ichthyosis - a mix of Netherton's syndrome and erythroderma. My skin is shiny because I use paraffin. My body is less red than my face as it's not exposed to the elements, but it is generally more painful. Ichthyosis is survivable - I have lived a very full life.

Thanks for linking to my blog too, so people are informed of the real me rather than through the speculation on this thread. For those who missed it, you can read more about me at http://carlyfindlay.blogspot.com

The original poster gave me an apology. A bit backhanded, but I thanked them all the same.

"Im reading all this and I apologize!

I was looking for "champagne fridge" on google images. When i saw your picture, I thought “WTF!" and further: “allergic reaction“, also your hair looks a bit on fire so I put it here.

Hopefully you see it as a good promotion for your blog and chapeau to you for being awesome!"

I felt a bit sick. So many people dissecting my photo on the Internet. But then I remembered.

When this picture was posted overnight, I was content lying in the arms of my love, having just seen a band and eaten a great meal - a night filled with laughs, and these posters were making fun of a stranger on the Internet. I think the location of this post, and the title is a clear indication of the original poster's intent. However, I say the others who joined in with the ridicule and the armchair diagnoses are just as voyeuristic.

I am resilient. I've got thick skin. These are just words on a screen. I am safe and loved, strong and intelligent, and can fight back with awesome.

But I worry for those who can't. What about those people who are mocked online and do not have the strength or words to defend themselves? Or even continue living?

This isn't just curiosity or having an innocent laugh. This is the ridicule of a stranger en masse. Think about how that impacts a stranger. Their parents, their partner, their children. Stop being a coward behind a screen. Get out there and experience people of all types.

Today's comments on Reddit showed me that the Internet is full of pretty awful people. But it also showed me people are so kind, and are willing to learn.

Thank you to everyone who went in to bat for me. Thank you. One of my worst fears happened and I smashed it! Fighting back with awesome wins every time.

For those visiting my blog fresh from Reddit, visit these pages to see how I live with ichthyosis, resources, and that I live a great life:

17 December 2013

I hate complaining that I'm busy, because being busy is a privilege. Being busy means there's something to live for, something to be done, progress to be made. There's so much to do! There's the day job, dinners out, bands to watch, drinks to be had, writing contracts to be signed, book proposals to be written, hands to hold.

My calendar's full, my tummy is full, my heart is full. God it's nice to love someone. And to be loved, too. Every minute spent with him is a joy - and makes me want more minutes with him. The minutes turn into hours and I neglect what I should be doing - writing. Sorry. It's not that my passion's been replaced by another, honestly. I want to write.

I feel guilty for not writing here. I don't want to publish a half-arsed attempt. But when I'm not writing, I'm out living life. Sometimes I just want to be writing, but sleep comes before writing most nights. I'm tired. Is everyone tired at the end of the year? There's four more working days til the holidays - that's 10 days rest! I'm hanging out.

Yesterday this blog turned four years old. It's been four years since I wrote this dodgy post, and look how far I've come. Hello world indeed. Thank you to everyone who has read, commented on or shared my blog, and especially to those of you who have stopped me in the street to say you're a reader!

11 December 2013

I made an amazing white peach and strawberry pie last weekend. So amazing that my boy licked his plate.

I felt like a summer fruit pie on the first day of summer, and I had a few ripe fruits on hand. I made this pie with what I had in the pantry, fridge and fruit bowl. It's super easy and tasted wonderful.

I'm not one to measure precisely, so feel free to improvise on my recipe. It would work well with nectarines or apples, or other berries.

Dice three white peaches (I guess you can use yellow peaches too) and hull a punnett of strawberries.

Place the fruit in a saucepan with a teaspoon of vanilla paste (or essence), a sprinkle of cardamom and cinnamon, the zest of half a lemon and a tablespoon of sugar. I think some grated ginger would be amazing too.

Cook the fruit on a low heat for around 20 minutes.

Place a sheet of pastry in a pie dish (you could make your own but I used puff pastry that I had in the freezer) and spoon in the fruit.

Leave the liquid in the saucepan and cook on high heat until it's reduced and sticky. Pour this back over the fruit you've placed in the pastry.

09 December 2013

I turned 32 yesterday. 32 seems like such a sensible age. Grown up. And so I bought myself some handmade porcelain cups. Because they signify 32 - the age one should have nice cups to drink from. No more discount tumblers or mismatched wine glasses. I also bought that floral dress. 32 is sophisticated.

I joke that I am getting old, but the reality is, I am not afraid of age. I look young (vaseline and rapidly renewing skin cells is the best beauty regime) and I feel youthful. I still consider myself as wide-eyed. Another year older is a gift. Every birthday I talk to my parents on the phone, thanking them for my gifts. Each year they remind me they (and the doctors) never thought I'd make it. Look how far I've come. I got some messages from some parents of children with Ichthyosis last week saying they have a big fear of the unknown for what's ahead. One asked me to tell them something about Ichthyosis that's not a scary statistic. I told them my age and what I do, and said life will be hard but it will be ok. I'm proof.

I woke up to cuddles from my boy yesterday - the best way to wake up. He bought me a silver necklace with our names inscribed on it. We had a perfect day: brunch, shopping, a cheese dinner and to the Bon Jovi concert. The night before we went to a retro party where I wore puffed sleeves and he wore double denim. And earlier in the week we saw Bob Evans at the pub. This boy, he holds my hand everywhere. People stare at me as usual. I see his head move, staring fiercely back at them, and I tell him to ignore the stares. Because when I am with him, I don't notice anyone trying to bring me down.

I love that because my birthday is in December, I can measure my age year with the calendar year. 30 and 31 were the best years so far. I cant believe the achievements this past year - three awards, countless articles published, speeches, reasonably good health, savings (and an overseas trip booked for next year!), great friends made and wonderful memories made with all of my friends, and finding love. Thank you to everyone who has cheered me on along the way. I expect 32 to be the same. I have plans for more writing and speaking, and to ensure I have fun at everything I do.

Thanks for your lovely comments on my last post - both on my blog and social media.

06 December 2013

Why hadn't those lyrics resounded before, when I've played Push over and over since 1997? And why was I only realising that then, in the middle of an event that made me so happy? Rob Thomas' familiar voice told me that I've always loved a man more than they loved me. I'd like to think there was some love between those men and I - there was, I could feel it, but the love was always uneven, temperamental, needy, ending. Always.

Until now. The love is even now.

I've been spending so much time with this boy. I've gone from an only child, sole dwelling, independence loving to missing him on the days we aren't together. I'm still getting used to calling him my boyfriend when referring to him in conversation, and when I do, I get giggly. I am so glad I gave him another (another) chance.

He's marvelled at how my cream on his hands - from holding my hands - makes his skin so smooth. He doesn't wipe me skin off him. He says my skin on him - in his pockets even - remind him of our time together. They're memories of me. I've never let me dermatological guard down this much.

This boy is the cutest, most considerate! Switching to sensitive skin products like body wash, sunscreen and deodorant as a precaution against hurting my skin when he hugs me.

We are open about our admiration for each other. This is a pictorial representation of us:

Though I don't like saying goodbye, I do like it when he kisses me goodbye before he goes to work, when I feel my least beautiful with squinty eyes and a scaly face first thing in the morning. He thinks I'm beautiful all the time.

03 December 2013

While disability comes in different forms, I have found there's a collective sense of empathy in the disability community. Putting my condition in a box - ticking that box 'yes I have a disability' - has been more empowering than I imagined it could be.

I never identified with any words to describe my appearance when I was younger. The nicknames I was called hurt, and I wasn't disabled enough to go to a special school so I never had an affinity with the word disability. In the era and town I grew up, the definition of disability was either so severe you went to a special school, or you weren't disabled at all. I too had limited perceptions of disability.

When I first started mentoring young people with chronic illnesses, I was only a year older than the oldest members of the program. They talked about their experiences of having a chronic illness - things like constant hospital stays and appointments, time off school and a lack of understanding from their peers. I realised that these were my experiences too. We were different, we didn't have to talk about our conditions, but we just understood each other. It didn't matter that our conditions varied, we could learn from and support each others experiences. It was then, in 2008 I realised that I have a chronic illness. I always knew I did, but that was the first time I felt like I belonged in a group.

And then, when I was on No Limits, I'd listen to the stories from people with all types of disabilities. I'd nod and laugh, and sometimes tear up, because I just knew. I don't know what it's like to be in a wheelchair, but I do know what it's like to be asked intrusive questions.

Every time I mentored, or spoke on that TV panel, I had an epiphany and felt the greatest sense of empathy ever.

I'd found my tribe.

I went to Quippings on Saturday - it's a disability performance night. The theme was 'Piss On Pity'. I read out my piece on normal. Lots of people came up to me to tell me they enjoyed and/or identified with my words. The audience featured various disabilities and expressions of sexuality - everyone raging against the normal stereotype. It was brilliant. Kate Hood spoke of the patronising conversations she has with people who pry into why she's in a wheelchair. She mentioned how someone chased her down the street to give her a piece of paper featuring the number of a faith healer in Indonesia on it. It's happened to me too. Another performer, 'And Deathray', who has a variety of invisible disabilities, ranted that its so hard when she just doesn't fit neatly inside the box of disability. She's more than a wheelchair accessible sign. Why is she so sore today when she looked well yesterday. Again, I haven't experienced Fibromyalgia, but I've experienced the reactions she's received - the assumptions, advice and especially the sheer lack of understanding.

A person with Ichthyosis asked why I Identify with having a disability. She seemed surprised - she told me she doesn't believe she has a disability. Maybe she was surprised at me because of the negative connotations that the word disability has, or the assumption that disability is a limitation on mobility only? I told her that while I can do so many things, the disability surrounding my condition is external to me. It's the curiosity, attitudes, reservation and hesitation towards my skin, and occasional harassment - all from other people. These experiences are what my friends with disabilities face too. We are all different but so much of us is the same through our collective empathy.

Disability is a little bit about what I can't do, a little about the discrimination and attitudes I face and yet so much about what I can do. I don't want to diminish the harsh and often sad reality of disability. But I - and so many of my friends with disabilities - see the word and the condition in a positive light.

Since I've identified with having a chronic illness and a disability, my life has become enriched. I've met great people and done so many things that I may have missed out on if I'd dwelled on the negative connotations and assumptions around disability.

For me, disability is pride. it's individualism and not giving a fuck about non conformity. Disability is showing them - the underestimators. It's a sense of community. It's friendship and a strong sense of empathy with a big dose of laughing at the ignorance of others' reactions. Disability is a place to belong. It's finding my tribe.

Today is International Day of People with Disability. I've done a couple of interviews - one for 3CR radio and another for ABC Online. You can see what events are happening near you on the IDPwD website.

02 December 2013

On Friday night I went to the Voices of 2013 party. It was wonderful to see so many bloggy friends again - I swear the friendship is the best thing about blogging. Everyone was so very lovely on Friday night - gosh it was good to see these ladies (and very few men) over champagnes and canapés. The ladies in the room were all so glamorous - it was fun to frock up!

It was an absolute surprise to win another award. These past three weeks have been the biggest, most overwhelming ever. Just wow. Thank you to Kidspot for running this competition, and all the classes and parties. I've loved it.

I've been thinking about the work we do as bloggers, and how it's finally being recognised as real media. And there's as much work in blogging as in other occupations.

As bloggers, we are writers, editors, marketers, bookkeepers, taste testers, food stylists, photographers, fashion stylists, social media managers, comment moderators, researchers, pitchers, financial negotiators and digital strategists. Often this is done on top of our day jobs - or it is our day job. We put ourselves out there, inviting support and criticism.

The blogging world has changed - for the better I think. Of course, there always seems to be the issue of the moment (monetisation, sponsorship anyone?) but the community is thriving more than ever. Competitions like Voices give prominence to the lesser known bloggers - so many of the top 100 said how much Voices has boosted their profile and also connected them with the community - online and offline. When I was blogging back in the early 2000s, there was an online community only. This time around, the online blogging community has moved offline, and I am so grateful for that.

I also think that there is an expectation from newer bloggers and those that do not blog that blogging is a get rich quick scheme. I can tell you that I've made $750 on sponsored posts this year, plus around $100 on ads. This year I have written and published 186 posts and I've had the biggest stats ever. It took me just over three years to reach a million hits, and almost a year to clock up another half a million. And yet I've made a bigger splash away from my blog.

(Melbourne Carlys represent - with Smaggle)

I laugh when I see TV characters taking up blogging - Julie Rafter on Packed to the Rafters and most recently, Sonia from Neighbours come to mind. They are quick to become leaders in the blogging community and quick to get a newspaper column and paid opportunities. TV character bloggers are overnight successes. It just doesn't happen.

I've spent almost 1460 overnights blogging on this blog. This has been a particularly successful year for me - of which I am so proud, but it's certainly not been an overnight success. It's a huge amount of work - and with very little pay via this blog for me. I do it because I love it, to have a voice, and for the chance to build up a writing portfolio. I now write with the view to be published elsewhere - it does save time.

So what advice do I have for new bloggers? Be persistent, be authentic and consistently your best (you don't need to write every day but when you do, put your best out there), and get involved in the blogging communities. And write well.

I believe great blogging comes down to good, engaging writing. The bloggers who I consider to be good writers (or talented photographers) engage me the most. Good spelling, grammar, punctuation and vocabulary make for a blog worth me reading - and it can be within any genre. And I think, if you want to make a go out of being a blogger, write like you want to be published, employing good writing. A strong story is so important for me as a reader, but if it’s not written well, I feel like the strong story may have lost its impact.

There is no overnight success with blogging. It's a slow build, and monetarily, may be considered as slave labour. But stick at it and your blog's reach will grow. You will grow too, and it will be one of the best, most rewarding hobbies you've ever started.

25 November 2013

Life's good. And I have writer's block. Does this happen to you too? Does your writing flow stop when your life feels full?

I saw Paul Kelly talk about songwriting and play a few songs yesterday. He's so smart, funny and generous. It was a privilege to see him in an intimate setting. He said that songwriting can be like fishing - you just show up and wait for something to happen. I feel like that sometimes.

Life's full, I feel like I have not stopped for two weeks. There's been social events, travel, friends, adapting to life with a boyfriend, trying to fit the gym in and working at learning a new day job.

I've had Fridayology stay with me for three days - we met blogging and it seems like we've knowneach other forever. It was so great to spend time talking to her in person, finally.

Found a great restaurant on Saturday night - Miss Katie's Crab Shack - amazing American food. We had the crab broil with corn, chorizo and garlic butter, plus corn bread and chips with blue cheese sauce. It was wonderful - cheap and fresh. The seafood is sourced from Queen Victoria Markets.

Dinner is served on newspaper and there is a complimentary bib to save clothing from crab spills.

Also, these sunglasses came in the mail. I think they're a little bit cool and a lot ridiculous. I feel like Dame Edna and Elton John. Hello possums! (You can buy these from ASOS.)

Life's good and I'm happy. I'm getting plenty of hugs and he's making me smile.

22 November 2013

On Tuesday and Wednesday of this week I was in Canberra for a very special event. My Mum was my guest. I was one of the winners of the Yooralla Media Awards. The awards were held at the National Press Club, and hosted by The Project's Charlie Pickering. The awards were attended by the shadow Disability Minister Jenny Macklin and Disability Commissioner Graeme Innes. Following the ceremony, Senator Mitch Fifield gave the National Press Club address.

I was a joint winner of the best online commentary for a body of work (I won the text category).

It was such an honour to win in the company of talented and socially conscious journalists from the ABC, SBS, Channel 7, Channel 10 and other publishers. I felt like a real journalist! And I made some great new friends there.

Graeme Innes reiterated one of the winners' comments that "disability reporting has moved from adversity to diversity". The winning entires showed honest, moving and inspirational reporting, yet never pitying or heroifying.

It's lovely finally being able to tell my editors - from Daily Life, Kidspot, Essential Baby, The Guardian and Mamamia - about this award. They've been so encouraging through my writing journey.

The support I've received from the judges, media colleagues, family and friends has been wonderful. I am overwhelmed with love right now. Thanks to everyone who has sent messages to me, especially those who do great work in the media.

It was a happy surprise when I met Debra Cerasa, CEO of MS Australia, and her colleague Lee at the awards. We sat in the airline lounge and I taught her some social media afterward. Debra wrote a great summary of the awards on the MS Australia blog.

It has been such a whirlwind week - a new romance, a new (temporary) day job and this award! Life's good!

Here is my acceptance speech:

Thank you for this award – and thanks to everyone who have helped me along the way – my editors, parents, friends, mentors in my day job, RMIT University, and to Yooralla and the judges. Graeme Innes has been reading and retweeting my blog posts recently and I’ve squealed in the same way as when I found out my idol Darren Hayes read my blog.

Also, thanks to the people who have said stupid things about the way I look - while there's ignorance and rudeness, I'm never without writing material.

I’m so proud to win this award today, especially among esteemed journalists. Almost all of articles I’ve had published this year have been republications from my blog. It's wonderful that blogging is recognised, valued and paid for by the maintream media. I can't believe I'm recognised as a real journalist today - my career goal since I was at primary school.

I believe there needs to be more people with disabilities telling their stories across all media - in online publishing, print media radio and TV. Telling our own stories educates, reduces stigma, pity, exploitation and sensationalism, and raises the level of expectation that society has about people with disabilities. It normalises difference.

My break in media started because of my blog. Online media has given me the chance to tell my own story in my own words – and has had a reach that I’ve never imagined. When a reader writes to me to tell me my story made them feel that they’re less alone and helped them to accept their or their child's visible difference or disability, I know I’ve done a great job.

For those of you in the room who want to break into the media to tell your story, or if you know of anyone with a disability who wants to, my biggest piece of advice would be to start a blog to get your voice out there.

20 November 2013

Sometimes people compliment me when my skin looks paler than usual. It's as though I'm five shades closer to a white complexion. (Ichthyosis-less, my South African heritage would probably mean that I'd have pale brown skin.) What they're not seeing (or feeling) is the pain on other parts of my body and the itching. And while these compliments are well meaning - and who doesn't want to be told they look great? - I can't help wondering whether looking paler is the path to being normal.

Normal. What's that?

It's as though the path to 'normal' is the expected path I should want to take. When people tell me that I'm normal just like everyone else or that I'm doing things that normal people do, they don't understand their good intentions are quite othering. 'Looking past' my face or coming to some sort of epiphany that I'm really quite 'normal' is naive and shallow. It's as though someone thinks they've done a good deed for not lumping me in the other category - the one where people are not 'normal'.

My blogging acquaintance Roni - a proud woman of colour - writes about the phrase "I don't see your colour". She writes: "When you tell me you don’t see my color, you are basically telling me that you don’t see a huge part of who I am and that doesn’t help me. What I want you to say is, 'I see your color. And it’s beautiful'." I identified with her post from a visible difference perspective. By someone saying they don't see colour they're saying they don't see your identity. They're not wanting to associate you with belonging to the other category that they are not comfortable with.

Earlier this year someone I had dinner with asked whether I'd want a cure, even just a treatment, to look more normal I guess? The conversation was uncomfortable; telling of their perceptions of a life lived looking different. They went on to say that by changing my appearance, it would be so much easier for me - fewer questions, comments and stares. I'd be being kinder on myself, they said. Their rationale, while not considering the pain aspect of Ichthyosis, was partly compassionate, and partly because they admitted not being able to cope looking like me. "I'd do myself in", were their exact words to me.

This conversation was full of beliefs and personal insecurities being pushed onto me. My dining partner may as well have been asking "wouldn't it easier to be straight?", or "use a little face whitening cream, it'd be kinder on yourself in this white society?".

Once I picked my jaw up off the floor after realising they'd alluded to the idea that a life like mine isn't worth living, I answered no. I wouldn't take a pill to cure or drastically treat my Ichthyosis. I have written a little about this before - during Ichthyosis Awareness Month and also my rant about pyramid selling - but since that question I have thought about it more deeply.

There's currently no cure for Ichthyosis. There are treatments to lessen the redness, scale, and pain. There have been since I've been alive. Retinoids, topical and oral steroids and infusions are the main ones that my doctors have recommended - treatments that will severely impair the quality of life that I currently have.

I see two sides to a cure: a medical cure and an appearance cure. I don't want either. A medical cure (or treatment, as things stand now) may hold worse side effects than Ichthyosis itself. And I think that an appearance cure is conforming to what society expects of me - the expectation that I would want to look 'normal' and de-identify with a condition that I've become accustomed to and accept. I see it as a bit vain, even.

This isn't to say I don't believe in cures, nor do I think striving for one is a bad thing. I can understand the yearning for a cure, especially if your life has been changed significantly by an acquired disability. You'd want a cure to get your previous life back, to be free of pain, to be ambulant, to live life 'normally'. I have a friend who is undergoing stem cell therapy to one day walk again - the work he puts into his rehab is admirable - and it's working for him.

When I was young, my family and I were in search of a cure. This was tiring - going to various skin specialists and herbal practitioners, the side effects were awful (not being able to go out into the sun, giant pieces of skin peeling off, lots of time off school, fatigue, weight gain, lack of sleep, the prospect of foetal defects...). I also met a number of adults with skin conditions who were also in search of a cure - they were tired too, and their conditions had not improved from the treatments they'd tried. And so of course I wondered why I had to visit another naturopath when these new acquaintances were not cured. In fact, they told me stories of how their skin was a little better, but their lives were impacted significantly, in a negative way.

Living with Ichthyosis has been tough. The pain is the worst. And then people's reactions. Those are two things I could do without. But it's also brought many good people and opportunities into my life, which I am very grateful for. And I'd be weighing up the impact on my capacity to live my life now versus the time spent and side effects of treatments.

Leah Hobson writes about being comfortable with her disability - not wanting to escape it. She mentioned the "faux compliments" people give her, telling her they could almost forget she's disabled. She doesn't want a cure for her blindness either - it has shaped her. There's an idea lurking behind them that everyone with a disability has the need to appear as non-disabled as possible." Leah writes that out of niceness, she's thanked people for their faux compliments. "I've actually thanked people for saying something that made me feel at best unintentionally devalued." She makes no apology for being comfortable of her disability.

Jax Brown also writes about the disempowerment that comes with de-normalising: "I am also routinely disempowered and disabled by a society which views my non-normative body as less than the ideal, the less then the so called normal." But like me she has pride. As Jenny Morris writes in Pride Against Prejudice, physical characteristics of disability or visible difference are seen as "not right and not admirable" and there's an expectation that "we wish to be normal or treated as we were".

But it's ok not to want a cure. and it's ok to be proud of having a visible difference or disability. This is who I am and this is what it is. It's not a life worth doing in, or a face to look past. I'm proud. This is my normal.

18 November 2013

After quite a bit of thinking (and a little hesitation) on my part, and lots of persistence on his, we have decided to make a go of this. It's nice. He's so different to me - which perhaps was a part of my hesitance - but the important thing is his kindness. He's cute, a good hugger, and he holds my hand in public.

Dating in the digital age - even if the dates were a result of online dating - is so strange. Everything becomes so public. While I'm a blogger and do share so much of myself with the world, I also realised just what a private person I am. Blogging doesn't mean I share everything, but it does mean that truth is concrete when it's written down. I've been used to being in control of what I share about myself online - how my life online is curated, I suppose - and so I didn't feel comfortable being tagged on Facebook after our second date. It was a little suffocating. Especially when I am so independent and I was not entirely sure of my feelings.

Curation of our digital spaces means we often share what we are proud of and happy about in our lives. Sometimes we can be too quick to reveal something - explicitly or through subtext - though our social media statuses. Regrets, luckily I've only had a couple. And sometimes, sharing something about ourselves online can make someone else uncomfortable, especially if that person is either not a big social media user or has prominence on social media.

A big part of my hesitation was about my tendency to fall for people through words alone - and especially words on a screen. His words have been very few, and I needed to be shown feelings, rather than just have them written to me.

I didn't even know whether I'd blog about this. What would it prove? is it too soon? Would it set things up for failure? Is it an invasion of his privacy? (I've spoken to him about my blogging and the permission I seek to write about people in my life - he's ok with it.) When I was younger, I imagined when I did get a boyfriend, I'd sign-write it in the sky. I thought I had something to prove. Now I know I don't have to prove my worth to anyone, and I've also found myself with a bit of a public online persona, careful of what I project. So my words here are measured.

There's a sense of pride in finding someone that you like or love. There's also a sense of pride from protecting it from the world. That changing your relationship status on Facebook, it just seems so public. But so is holding hands, isn't it?

(We've been doing some fun stuff on our dates, and yesterday we saw some animals at the Collingwood Children's Farm. Here he is with a tiny baby goat. Nawww!)

15 November 2013

I've known Andy Jackson for around nine years now. I used to perform poetry in cafes and pubs in Melbourne and he was either organising the event or performing poetry, or both. He's an accomplished and celebrated poet - published in Australian and international publications, his book of poems was shortlisted for the 2010 NSW Premier’s Prize for Poetry, and has performed locally and overseas including The Age Melbourne Writers Festival, Prakriti Poetry Festival [in Chennai, India], Goa Literary & Arts Festival, Australian Poetry Festival, Queensland Poetry Festival, Newcastle Young Writers Festival and Overload Poetry Festival. Andy also runs writing workshops.

Andy and I reconnected in February this year when I read out a piece at Quippings - a disability arts event at Hares and Hyenas in Fitzroy. Andy was in the audience. We've been emailing back and forth and met up again recently before he went off overseas for the second time in a month (lucky guy!).

I've always been curious about the curvature of his spine, but never asked him.

He tells his story here today.

"In the last twelve years, I've had the pleasure of quitting four positions – the Commonwealth public service(Child Support Agency, would you believe?), a cafe-venue-bar I co-owned called “Good Morning Captain” in Collingwood Melbourne, Medicare Australia (yes, in a call centre), and a claustrophobic admin job for a micro-managing tax lawyer. And I've lived in eight different houses in the last twenty-five years (though, yes, all of them in Melbourne). But there are two things that I could never leave, even if I wanted to. They define me. I'm as inseparable from them as wings from sky, pith from fruit, thought from words.

Those two things are Marfan Syndrome and poetry. Marfan is a genetic condition that affects the functioning of connective tissue – it can affect the heart, the eyes and joints, but each person with it is affected in very different ways. The most critical of course can be the aorta, which can tear suddenly if put under too much pressure. Quite a few people who didn't know they had the condition have died from an aortic dissection. Being one myself, I'm beginning to feel I can recognise someone with Marfan – they're usually quite tall, very long-limbed, with fingers you'd expect from a pianist. Many of us have some kind of skeletal irregularity. For me, it's a very noticeable spinal curvature. I have what you might call a stareable body.

Most of the time, of course, I live my life and people relate to me as they would anyone else. There is certainly a lot of typically-Australian furtive staring, along with the open-mouthed curious children (and their uncomfortable parents). But now and then, something memorably bizarre or unsettling happens. At a Job Network (which shall remain nameless), I was called in to attend a mock interview – there was a position going and they might refer me for it. I thought it all went well, until I was called back afterwards and told that it probably wasn't a good idea to wear a backpack underneath my shirt. I was too stunned at the time to realise what she was talking about, but I did send off an assertive and educational email afterwards. I've had fundamentalist Christians and New Agers say they can heal me, who keep persisting with their offers even when I say I'm fine as I am. A few people have wanted to touch my back (as if it will feel any different to their own). I've had words and bottles thrown at me from cars.

When I step onto a stage to perform poetry and dozens of expectant eyes are on me, I can't say it's uncomplicated. I suspect I got involved in reading poetry because, subconsciously, I wanted to be in control of how I was seen. I made myself visible on my terms, and spoke words that complicated people's experience of me. One of my early poems begins “I have a hunch” (long pause) “that curvature can be aperture”.

After performing and publishing poetry for over fifteen years now, I know it's not actually about me. It's communal. And poetry holds an incredible power, regardless of its low public profile (perhaps even because of it). Poems have their roots in intensely subjective and often private experience – the inarticulate and compelling bodily reverberations. Like trees, these stirrings reach for the light, for the nourishment and transformation of language. So, we write and publish and recite. And in that public space, the audience or reader's empathy or affinity is activated – the poems cross over from the self to the other, from “I” to “us”, shining the light of language on the bridges that connect us. I have no doubt that poetry and Marfan will continue to lead me into some amazing territory, to meet familiar strangers, new confidants and friends.

Oh, and just so you know, my heart is regularly monitored and is fine. Perhaps for that I can credit poetry, or my other “inseparable”, my partner Rachael, with whom I travelled with to Ireland to perform our puppetry-poetry collaboration “Ambiguous Mirrors”. Which is another (poetic) story..."

11 November 2013

When you have a visible difference or a disability, you may spend a lot of time noticing how society reacts to you looking different to the masses. There's curiosity, exclusion, horror, patronisation, encouragement, inclusion, rudeness, surprise, honesty, fear, ridicule, and great compassion and kindness. I think I've experienced the full range of human reaction living with my visible difference.

While it is so important for awareness about disabilities to be raised, the media often doesn't present visible difference and disability in a positive way. We are the villains (think Two Face in Batman or Freddy Kruger), a person to be ridiculed (remember the short statured person, repeatedly described as a dwarf by the media, who was hired for entertainment then set alight by a footballer on Mad Monday?) or described as 'wheelchair bound'. People without disabilities play us on TV - there's Artie on Glee and Dustin Hoffman on Rain Man, and prime ministers have been known to pat people with disabilities on the head - maybe through condescension or misplaced kindness?

Social media can be just as bad as the mainstream media - with the heroifying and ridicule of people with disabilities. I can think of a lot of social media memes that picture people with disabilities playing sport, and an accompanying caption "the only disability is a bad attitude". There is also the audience reaction that is no longer limited to discussion in the privacy of one's own home - I cringe when I see people clicking and commenting on photos of sick babies on Facebook - there's a sense of nativity that a click for a prayer will donate money for a cure, and also the cruel reactions to the pictures.

I have a great problem with not being in control of my story. That's why I write and speak my own. I want it told in a respectful, non sensationalised, non patronising way. And I don't want my condition to be labeled exploitatively by the media just to draw in readers. Since I've had my blog, it's given me more confidence to tell my story across a range of publications and on a community TV program called No Limits, and also for me to consider approaches from the media to tell my story. In July 2013 I was verbally abused by a taxi driver - and I wrote about this on my blog and for Daily Life. It was also reported (very fairly and sensitively by a journalist on News.com.au. I found it interesting that when I have told my own story, the readers' responses have been far more empathetic than when a story was written about me.

And that brings me to participation in disability related media when you're not in control of your own story.

Last year my blogging colleague and friend Carly Jacobs, who blogs at Smaggle, discussed how the TV program The Undateables had moved her and restored her faith in humanity. At that stage I had not watched it - I was reluctant to do so because of the way I feel about Embarrassing Bodies (I have a big problem with the title and viewers' gross out reactions to Embarrassing Bodies - see my commentary here and here - and I also get frustrated when people defend the show, the contestants who take part, and the viewers who ridicule the show and contestants), but after reading Carly's thoughts on it and asking me what I thought. I watched TheUndateables on iView.

The Undateables shows the stories of people with visible differences and disabilities trying to find love. The participants have many disabilities and visible differences - Tourette's, OCD, short stature, facial differences, Down's syndrome, autism and Aspergers, learning disabilities, brittle bones and paraplegia (in season 2 alone). They sign up to a dating agency and are matched with potentially compatible dates. The program highlights the struggle people with visible differences and disabilities face with self esteem, being accepted and also the discomfort that society sometimes has around being in the company of a person who looks different.

I found it very similar to Beauty and the Beast - The Ugly Face of Prejudice which pairs up self obsessed, vain beauties with people born with disabilities or acquired disfigurements, and helps the 'beauty' do away with the importance placed on image. (I wrote about it in detail here). The premise of both The Undateables and Beauty and the Beast is to showcase the reality (if a reality TV show can be deemed a reality) of the prejudices faced by people with disabilities and disfigurements, and change peoples' perceptions and value of appearance. Both programs were very sensitive, allowing the viewer to feel empathy with the participants (I think anyone could relate to the situations of the participants - both those with visible difference and disabilities and those without), and I felt like they invited less ridicule than Embarrassing Bodies.

However, I completely disagree with the term 'beast' or 'undateable' used about someone's appearance. It is these labels that create negative perceptions and exclusion towards people with visible differences and disabilities. And I believe the titles create a sense of othering - a divide between people with disabilities or visible difference and those without. The TV shows become curious case studies of how the different live.

Twenty one complaints were made to the British Advertising Standards Board after the ad for The Undateables was aired. Complainants said the title was offensive and derogatory towards people with disabilities, suggesting they were "inevitably dateless and incapable of having a personal relationship".

Raymond Johnson, a participant in The Undateables, told The Guardian that he has received a great response from strangers since appearing on the program (he feels like a celebrity!), and he believes the program has helped change attitudes towards people with disabilities. "It was done really impressively, apart from the title", Raymond said. "If there is going to be a third series, they should change the title", he told The Guardian. A friend of mine, Nelly, also with Ichthyosis, has written on my blog about the positive experience she had on Beauty and the Beast. "[Beauty and the Beast] helped me to get more confidence and I wanted to show people what I had to do keep my self healthy and alive", Nelly said.

It is a relief to me that both Raymond and Nelly have had positive experiences participating in these TV programs. Their experience and watching the programs also shown me that just like with meeting people with a visible difference or disability and forming an initial judgement based on appearance or a label, I need to get to know the program by watching it rather than judging it by title alone. And I encourage people without visible differences and disabilities to watch these shows with an open mind too.

The UK's Channel 4 has made a commitment to disability programming - and these programs have filtered to the ABC in Australia. I hope the Australian media has the same level of commitment to disability programming in the not too distant future.

Edit: since I wrote this post for Smaggle, I've been watching season two of The Undateables on iView and have enjoyed most stories featured. At times I do think that the relationships shown developing have been very simplified, and there is a strong tone of "just like everyone else" throughout, but overall, I'm more impressed than I expected to be.

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The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.